No Evidence of Disease Doesn't Mean Cured

I’ve had the results for two weeks now, but I’ve been waiting to write this post because I wanted to get the post-op appointment with the surgeon done first. I’m currently sitting at day seventeen post-surgery and am happy to say that I am officially in the “No Evidence of Disease” category.

Six days after my surgery, the surgeon called to give me the results and go over what the pathology report said post-surgery. I am going to be honest, every time she calls me I feel my chest tighten in preparation for more bad news. But this time, her voice on the phone was different. It was my husband’s birthday, and I guess his present was her phone call. 

She happily informed me that the surgery went perfect, that the margins were clean, and there was no evidence of cancer in any of my lymph nodes. She explained that in my left breast, three of the spots seen on MRI were cancer, and one was just a benign growth. In my right breast, the one spot seen on MRI was cancer and there was no other evidence of disease in that breast. 

Pathology on the three tumors remained the same post surgery; one HER2+ and two HER2-, with all three strongly expressing estrogen and progesterone hormones. I asked why they didn’t run pathology on the third tumor in my left breast, and the answer I got was because the HER2+ reading trumped whatever the findings would’ve been for that tumor. 

I hung up the phone on September 23, 2020, after a little over a month since receiving a cancer diagnosis, with no evidence of disease. I called my husband, gave him the good news, and then texted various friends and family. But the thing is, I wasn’t and still am not out of the woods, nor is my treatment, and this chapter of my life even close to over. Everyone was jumping for joy, and I wasn’t happy; all I was thinking about was that I was definitely getting chemotherapy. That this phone call confirmed that my journey was just beginning. 

I met with the surgeon last Thursday to go over the pathology and next steps in person. I expressed my concerns about not knowing the pathology of the third tumor in my left breast, and asked that they test it to make sure it’s not triple negative. I am hoping that the pathologist will agree to test the tumor because I want to know what it was, for my own peace of mind. 

It was a strangely laid back meeting with the surgeon to go over the pathology and have my incisions checked. We spent almost the whole appointment just chatting about various topics unrelated to cancer, and I have to say that I’m very grateful that this young woman is my “person” for the foreseeable future in my post-cancer journey. I’ll have an MRI in six months and a mammogram six months after that and then every six months I’ll swap between MRI and mammogram for the foreseeable future to make sure the cancer doesn’t come back.  

I left Elliot Breast Health Center Thursday and won’t have to go back for six months. Friday, I had my second post-op appointment with the plastic surgeon and everything is healing perfectly. I go back in two weeks to see them again, and then probably one more time two weeks after that. 

This Wednesday I will be trading my two surgeons for two Oncologists as I start the next phase of my treatment. I will have two new people to learn and hopefully trust. I still don’t know how long or how much medical treatment I will get in order to lower my chances of recurrence, but I do know I will have a Radiation Oncologist and Medical Oncologist. I know that I will have radiation, chemotherapy, and then endocrine therapy and these three treatments will take the better part of a decade to complete (endocrine therapy is a pill you take for ten years). 

I’ve learned more than I ever wanted to know about cancer in the last month. I lost a pound of flesh because of this horrible disease, had to get off birth control (which regulated my PMDD), will have to switch my anxiety medication (it conflicts with the endocrine therapy), will lose my hair, and have to go through some pretty intense treatments (radiation and chemotherapy) that are definitely not without their own risks long term. And I’m one of the lucky ones. If there is one thing I have learned through this whole process it’s that even the lucky ones have to go through a lot to treat cancer. 

In a few days, I will meet with the one person I never wanted to meet with: the Medical Oncologist. I’ve slowly come to terms with the fact that I am going to have chemotherapy and that it’s going to be happening sooner rather than never. I’m trying to change my mindset and tell myself that I’m not afraid of throwing up and that I won’t throw up, and even if I do, I’ll be ok. I can’t avoid this, I can’t hide from it, and yes it’s going to be really scary for me especially because of my phobia, but I must face it, and most importantly, I will live through it, even if it scares me. I’m hopeful that the medication they give you during and after chemo will help me feel only moderately horrible. 

At my appointment with the first Medical Oncologist back in September, I wore my hair down because I was hoping it would persuade him to say I didn’t need chemo. Clearly it didn’t work but I’m much more at peace with and almost secretly looking forward to getting rid of my hair. I know it’s going to be annoying growing it back out again, but when I got the idea of donating my hair, it felt like I wasn’t really losing it, I was just giving it to someone else. I’m going to donate my hair to Children with Hair Loss once I’m sure I will have chemo (it’s 27” long right now so that’s a lot of hair to donate). I’m also secretly excited to shave my head. How many women get to shave their head? And I plan on doing it myself because I’ve earned the opportunity to take the buzzers to my scalp and have my own G.I. Jane moment after all of this. 

I’ve been in a strange sort of limbo since getting the call that I was now in the NED category. I’m technically cancer-free, but I’m never truly cured because you can’t cure cancer. It’s very odd to me that I’m NED but still need all of this treatment. I asked my husband what to tell people when they ask if I have cancer or what to say when people ask why I’m having treatments now since I’m NED. I feel weird saying I “had” cancer, because technically I could still “have” it. What’s more, it feels even more strange to go from this person with a deadly disease to a person who is essentially healthy in a matter of hours. They cut out the cancer, so now I’m normal again? It’s just such a strange feeling. 

I haven’t even had time to process the diagnosis and all of a sudden I don’t have that diagnosis anymore? This journey moves at contradicting speeds. While I felt like getting the surgery scheduled, and the myriad of tests done took forever, the call confirming I’m NED took seconds, and my head is still spinning from the first phone call diagnosing me with cancer back in August. On the other hand, I look at the long road ahead of me, the year of chemotherapy and radiation, and it seems to stretch out into eternity. It seems like I will never be done treatment for something I don’t even have evidence of anymore. Am I treating ghosts? I’m not willing to roll the dice and risk recurrence by foregoing treatment. Where at the first oncology appointment I was willing to refuse treatment and risk recurrence, I am now wondering why I’m not getting more radiation on my lymph nodes, just in case. 

With every passing day, I’m one step closer to the end of this chapter in my life; but I’m learning to turn each page and accept that there are more pages to read than what I have already read. I’m learning patience and reflecting on what matters most to me. I may be cancer free, with no evidence of disease, but I will never be fully cured and perhaps that’s ok. Perhaps the lessons I’ve learned and will continue to learn through this experience are almost worth everything I’ve had to go through in the last forty-seven days. The Lord isn’t surprised by any of this. I’m not alone on this journey. And I trust that He knows exactly what He’s doing, even when I have no idea. So for now, I’m settling in for the long road ahead and accepting that I’m not in control, He is.